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I am enraged right now. The only way I can contain myself is to write and hope that you will become enraged too.

This is today’s story.

I am the one person who has responsibility for the care of my elderly uncle. He has very little money, has autism and is almost completely blind, among other things. I live in the same state but in a different city about 2 hours away. He has a team of daily caregivers (through his healthcare plan) who come in and help him clean the apartment, shop for groceries, take a shower. I oversee his overall care and pay all his bills. I have Power of Attorney and a Health Care Proxy, both documents which have been sent to his case worker and the medical plan.

Recently, he had his eye removed after many attempts to relieve pain and stop an infection. He is scheduled for an appointment to fit him for a prosthetic eye. My uncle doesn’t drive and does not have cell phone. I have tried to equip him with a cell phone but because of his poor sight and other personal preferences, he has refused it. So, I do much of the coordination for him. His appointment for the prosthetic eye requires transportation and there is a number to call to set it up. Every time you call this number you are there are typically 8 – 20 callers ahead of you, so you are on hold for quite some time. After numerous attempts, I reached a person to schedule the drop off and pick up for my uncle, as I have done many other times before. This time, I did not have the pick time (wasn’t sure how long the appointment would last) so I was told I could call the doctor’s office to determine the length of the appointment and when I had more information I could simply call back and update the transport request.

I called the doctor’s office and the woman I spoke to was very helpful and accommodating and then I called the transport number to update the transport request. Each time I called there was a significant waiting time and sometimes while waiting, I was disconnected. Finally on my 3rd attempt, I was able to get a person on the line. I simply told her the updated time for the return trip.

She asked me my name and I told her my name.

“I am sorry. I cannot make any changes unless I speak to the patient.” she said.

I explained that I have made these arrangements regularly (just the other day in fact) and the new reservation was already set. She told me she needed to speak with my uncle directly or I would need to send a copy of the health care proxy to her office as well as other documentation.

“You need to send us the health care proxy in addition to a letter from the Primary Care Physician stating you are the health care proxy before we can make any changes.” she said.

Really? Really. Lets step back for a minute. The appointment is the day after tomorrow. The reservation is set. The return time is stated as “will call” and all I want to do is set the time to 3:15. That is it. The Health Care Proxy was signed and supposedly stored with the health care team almost 2 years ago, though I wonder why this is even relevant to a transportation request.

Why, why is this so cumbersome? What are we doing? What are we doing? Does this at all make any sense? The unintended consequences of health care privacy legislation is to make health care incredibly cumbersome for families and especially those with relatives who cannot advocate for themselves. This is just unacceptable and patients and families need to speak up if we want any kind of change.

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Unlike most of the other patients who have become actively engaged in efforts to improve healthcare, I don’t have a dramatic illness or medical error that activated them. In fact, I didn’t even know I was getting involved or even that there was something to get involved in when I started.

I moved to a new geographical area and due to my rare neurological disease, I took all my care to a nearby teaching hospital. In first several visits to a variety of different doctors for various issues, I had an average wait time of over an hour. No one ever acted like there was anything unusual about that or apologized for the delay. For my next few visits, whenever I was called and was asked how I was (to which I learned you were supposed to say fine even if it wasn’t true) I started adding, “it seemed like there was a very long wait today.” The response I got uniformly from everyone was some variant of “we’re busy.” It occurred to me that this was all about them, none of their focus was on me.

I had moved from a place where each desk in the outpatient facility had a sign on the counter saying, “ if you haven’t been seen within 15 minutes of your appointment time, please let us know.” to a place with no communication and a response of “we’re busy”. For the last 32 years, I was always seen within 15 minutes of my scheduled appointment and now this was no longer the case, in a new facility. So, I found the email of the CEO and sent him a description of my experience, noted that this was clearly systemic and that I would be happy to talk to anyone about my concerns and to let me know if I could do anything to help improve the situation.

A couple of weeks later I got a call from a patient leader in the hospital asking me if I would like to join their patient and family advisory group. At that point, I had never heard of patient advisors or of Patient and Family Centered Care but thought it would be interesting to see if I could contribute to some positive change.

Now, 12 years later, I have been fortunate to have become involved in the work of various different healthcare organizations from the local hospital level to major national groups. In all that work, I’ve noticed three important things:

Patients sometimes contribute to important changes – e.g. my average wait time in the last few years has been roughly zero!

There are many organizations discussing and making recommendations for change without working together – and most of my experience as a patient has changed very little.

The patient voice, while increasingly present is all too often drowned out by the professional’s voices. The patient’s role in improving the experience requires clarification and amplification.

I often ask myself, what might healthcare look like if patients had an equally authoritative role with all of the others working on improvement?

We have started this blog as a venue for us (and others) to share their view of changes that we (patients) would prescribe to make all aspects of the experience better.

The time for shorter wait times in health care improvement has arrived and we hope to contribute a strong patient voice to the discussion.

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